Anyone here had a Brain Stem Implant?

Beo,not to pigpile on you but she's late deafened.....She lost something she had for almost all of her life....so of course she would be looking for something that could help her hear a little better......It's NOT a cure.....Having a BAHA,HA, CI or ABI doesn't mean you don't accept your deafness.....Most late deafened people respond well to hearing technology.....Imagine if you lost your sight....you would want to look into every and anything that could help you in that area right? It's the same thing with CI,HA,BAHA, or ABI for dhh (especially late deafened) people.
 
Rather than this ridiculous quarrel over the ignorance of Deaf people regarding hearing technology, read a bit about this particular device.

What are the risks associated with auditory brainstem implant surgery?
Implanting an auditory brainstem device requires brain surgery and, more specifically, skull base surgery. This area of your head contains many small structures that complicate the operation. In addition, your brain stem is an especially delicate and vital area of your brain.

It is important that you ask frank and honest questions of your neurosurgeon before electing to have this surgery. Your neurosurgeon will be able to explain the risks and rewards of the procedure after having thoroughly reviewed your medical history. If you would like to find out how you can schedule a consultation with a Barrow specialist, contact us.



What kind of results can I expect from an auditory brainstem implant?
An auditory brainstem implant will not return your hearing to normal in most instances. Rather, it will allow you to detect broad audio cues, like a door slamming or a ringing telephone. Results vary, however, and 16% of people who have received an auditory brainstem implant are able to understand the spoken voice without the assistance of lip reading.

You will need to work with an audiologist, who will program your implant and teach you how to recognize and interpret the signals. This process takes months or even up to a year to complete, but does not require any additional surgeries. It does, however, require a mentally strong, motivated, and actively participating patient.

Again, results vary for each patient. You may find that your ability to recognize words and speech is relatively good after working with your audiologist, or you may need to develop a synergy between your lip reading skills and the audio cues delivered by the implant to understand what others are saying.
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Auditory Brainstem Implant
 
Notice, if you will, that I didn't give an opinion on brain stem implants. I don't know anything about them. I don't generally give an opinion on something I don't know anything about. That is not the case for some people. It's also not my place to tell someone that's something this important is or isn't worth it. I am not them, what may be worthwhile to some may not be for others. But when someone does put in their two cents when have absolutely no percpective of where someone is coming from....yeah that sticks in my craw.
 
ambrosia said:
Notice, if you will, that I didn't give an opinion on brain stem implants. I don't know anything about them. I don't generally give an opinion on something I don't know anything about. That is not the case for some people. It's also not my place to tell someone that's something this important is or isn't worth it. I am not them, what may be worthwhile to some may not be for others. But when someone does put in their two cents when have absolutely no percpective of where someone is coming from....yeah that sticks in my craw.
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I wish you could get a CI soon :|
 
ncff07 said:
I wish you could get a CI soon :|
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Crossing my fingers it will be within the next year :D course they may tell me my cochlea is too damaged but why borrow trouble right? I'm not sure if my hearing aid is acting up, maybe need new tubes and/or filters but I'm not hearing as much. Like the noise it makes when in turns on is wicked now :/ prob just the tubes or filters, but if it IS more hearing loss I don't want to spend too much time like this, just as far as my brain getting access to sound goes. I think ABs new electrode might work even if my circles is bad, hell it might be fine I don't know. But I think I should probably implant my "good" to get the best results. Yikes. That's nerve racking as far as working goes......that's the ear I use to "listen" with. Anywho.......
 
ambrosia said:
Crossing my fingers it will be within the next year :D course they may tell me my cochlea is too damaged but why borrow trouble right? I'm not sure if my hearing aid is acting up, maybe need new tubes and/or filters but I'm not hearing as much. Like the noise it makes when in turns on is wicked now :/ prob just the tubes or filters, but if it IS more hearing loss I don't want to spend too much time like this, just as far as my brain getting access to sound goes. I think ABs new electrode might work even if my circles is bad, hell it might be fine I don't know. But I think I should probably implant my "good" to get the best results. Yikes. That's nerve racking as far as working goes......that's the ear I use to "listen" with. Anywho.......
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My ENT Dr and audiologist both recommended using my worse ear ... just in case the CI didn't take I'd have a little hearing in the other one still ... I'll keep my fingers crossed for you :D
 
Bottesini said:
Rather than this ridiculous quarrel over the ignorance of Deaf people regarding hearing technology, read a bit about this particular device.



Auditory Brainstem Implant
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Surgery is risky surgery no matter what. If someone got into an accident and had to go into surgery for emergency, then the person who goes under the knife will take the risk to save oneself to live. That is reasonable.

But when it come to getting the surgery for wanting to have it done just like the 13 years old girl who had tonsil surgery. It is risky to have surgery when she had all those complications. It is the same with face lift surgery or trying to get rid of fat in her or his body. Going into the knife for having CI or ABI is taking a risk on that, too. :(

EDIT: it is not emergency above. ^^^^^^ :roll:
 
Ambrosia, I took what Bebonang said entirely differently. Maybe because I have a similar view of the surgeons scalpel. There is nothing wrong with the voice that says I don't know about that are you sure you want to do that? I personally feel sick to my stomach just thinking about someone cutting deep into my head with a knife. The alternative may be deafness; it is a real alternative. Why shouldn't she say it? She did not say it to rain on anyone's day that is for sure.
 
goodonya said:
Ambrosia, I took what Bebonang said entirely differently. Maybe because I have a similar view of the surgeons scalpel. There is nothing wrong with the voice that says I don't know about that are you sure you want to do that? I personally feel sick to my stomach just thinking about someone cutting deep into my head with a knife. The alternative may be deafness; it is a real alternative. Why shouldn't she say it? She did not say it to rain on anyone's day that is for sure.
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Oh she can say it but as long as she continues going around telling late deafened people, just accept your deafness, it's not worth it, I'm going to continue to tell her to rethink the way she puts something. She has no idea of the worth ;) If she had ever had hearing I wouldn't mind it so much, but she hasn't, so she has no idea what the hell she's talking about...........among other horrible things she says.....like saying kids with CI look like Frankenstien or robots, yeah I'll continue calling her out :D
 
ambrosia said:
Oh she can say it but as long as she continues going around telling late deafened people, just accept your deafness, it's not worth it, I'm going to continue to tell her to rethink the way she puts something. She has no idea of the worth ;) If she had ever had hearing I wouldn't mind it so much, but she hasn't, so she has no idea what the hell she's talking about...........among other horrible things she says.....like saying kids with CI look like Frankenstien or robots, yeah I'll continue calling her out :D
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If you had ever been Deaf, your opinion wouldn't count anymore?
 
Bottesini said:
If you had ever been Deaf, your opinion wouldn't count anymore?
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As far as putting a worth on hearing.....hell no. And I AM deaf, there is if I had ever been. I actually know what it's like to be both.
 
ambrosia said:
Crossing my fingers it will be within the next year :D course they may tell me my cochlea is too damaged but why borrow trouble right? I'm not sure if my hearing aid is acting up, maybe need new tubes and/or filters but I'm not hearing as much. Like the noise it makes when in turns on is wicked now :/ prob just the tubes or filters, but if it IS more hearing loss I don't want to spend too much time like this, just as far as my brain getting access to sound goes. I think ABs new electrode might work even if my circles is bad, hell it might be fine I don't know. But I think I should probably implant my "good" to get the best results. Yikes. That's nerve racking as far as working goes......that's the ear I use to "listen" with. Anywho.......
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Why would you implant your "good" ear?
 
Tousi said:
Why would you implant your "good" ear?
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My good ear is profound, and has been for maybe 2 1/2-3 years, but I still get enough speech to understand 30-40% of what's said. My left, my bad one is profound to response and had been for probably more like 8ish years. It went totally unaided for 6 years, the Audi I had when I need to get powerful aids didn't recommend I get one for that ear, that I wouldn't get much speech and the vibrations from the sound waves hitting that ear drum would make me dizzy. When I got my next more powerful has last summer I got one for it, but I don't use it much, I don't get speech out of it and it does tickle inside my head. It's just noise and it's distracting. Anyway, since it's been without sound for close to a decade I'm afraid the nerve on that side might not have been stimulated enough and I wouldn't get results as good as the other side.

Personally I'd rather do the worse side since I do mostly manage with my better, I can't call it good that's so silly, but if I am going to do this I'd like to stack the deck in my favor. Long story short they're both bad, one is just slightly better than the other, and one's been without sound for a long time, it could end up like someone that's been deaf all their life and getting implanting as an adult. If I did the worse ear it could up not worth it :)
 
as long as you all have CI insurance, and a long term insurance then you will be OK. :shock: CI eats up our incomes. :shock:
 
Frisky Feline said:
as long as you all have CI insurance, and a long term insurance then you will be OK. :shock: CI eats up our incomes. :shock:
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What do you find about it "eats up our incomes"? My understanding is that the ongoing expense would be batteries and you have that with hearing aids as well.
 
Jane B. said:
What do you find about it "eats up our incomes"? My understanding is that the ongoing expense would be batteries and you have that with hearing aids as well.
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batteries are really nothing. Sometimes I got them for free. CI equipment and many parts are pretty expensive. Having CI is to be wise to HAVE AN INSURANCE. :shock: My hub has CI for several years and keep costing us anyway.

edit to add: I just learned that my hub quitted paying the CI insurance.. it costs $850.00 per year. So he has to be careful with CI. I didnt know and know why now.
 
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ambrosia said:
My good ear is profound, and has been for maybe 2 1/2-3 years, but I still get enough speech to understand 30-40% of what's said. My left, my bad one is profound to response and had been for probably more like 8ish years. It went totally unaided for 6 years, the Audi I had when I need to get powerful aids didn't recommend I get one for that ear, that I wouldn't get much speech and the vibrations from the sound waves hitting that ear drum would make me dizzy. When I got my next more powerful has last summer I got one for it, but I don't use it much, I don't get speech out of it and it does tickle inside my head. It's just noise and it's distracting. Anyway, since it's been without sound for close to a decade I'm afraid the nerve on that side might not have been stimulated enough and I wouldn't get results as good as the other side.

Personally I'd rather do the worse side since I do mostly manage with my better, I can't call it good that's so silly, but if I am going to do this I'd like to stack the deck in my favor. Long story short they're both bad, one is just slightly better than the other, and one's been without sound for a long time, it could end up like someone that's been deaf all their life and getting implanting as an adult. If I did the worse ear it could up not worth it :)
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In regard to a CI, it really doesn't matter which ear is implanted cuz the CI is totally not like a hearing aid. Doctors recommend implanting the worse ear just in case the CI doesn't pan out. Then you'd have the better ear left to use a hearing aid in.
 
Tousi said:
In regard to a CI, it really doesn't matter which ear is implanted cuz the CI is totally not like a hearing aid. Doctors recommend implanting the worse ear just in case the CI doesn't pan out. Then you'd have the better ear left to use a hearing aid in.
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Not really. You have two sets of auditory nerves, for each ear, without stimulation they kind of atrophy just like an unused muscle. The nerves on my worse ear haven't been stimulated as much on the ones in the other side. But if people are choosing their worse side and "saving" their hearing in the other ear to use a HA in, that could maybe explain dissatisfaction with their results hmmmmm. I'm not positive, but I think NaidaUP has mentioned in England they implant a persons good ear, for just the reasons I stated, they don't get to pick a side if ones better than the other.

I realize that CI doesn't work like hearing aids, they bypass the hearing structures in the ear and stimulate the auditory nerve itself. This is why a CI wouldn't work for the OP, her auditory nerves are damaged.

I'm wondering OP, you had an acoustic neuroma? For a little while there I wondered if I might have one and it caused more hearing loss after I had been told that I wouldn't lose anymore. I had also had brief periods if extreme vertigo and my pupils are often different sizes (I found that can happen with hypoglycemia as well) Was it only on one side? Is your hearing intact on the other side?
 
ambrosia said:
This is why a CI wouldn't work for the OP, her auditory nerves are damaged.

I'm wondering OP, you had an acoustic neuroma? For a little while there I wondered if I might have one and it caused more hearing loss after I had been told that I wouldn't lose anymore. I had also had brief periods if extreme vertigo and my pupils are often different sizes (I found that can happen with hypoglycemia as well) Was it only on one side? Is your hearing intact on the other side?
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OP stated she has NF2. Acoustic neuroma is caused by NF2, and the ABI is specifically for this.

Also neurosurgeons really do caution NF2 patients about the risks and limited benefits of the ABI.

My husband's cousin is a sufferer of acoustic neuromas.
 
Sorry if I'm a bit late to the party, I just came back. I have NF2 and have had tumors removed on both sides. That being said, the surgeon managed to save one of my hearing nerves on one side and I have a Cochlear Implant and hear pretty well and have been for the past 6 years. Apologies if this has already been answered in this thread, I only skim-read it before replying!

Edit: My Mum has an ABI (brain stem implant) and it does provide some better "hearing" but a lot of noise to her, but I suspect everyone's experience is different. I can't speak from personal experience. It won't give you as much hearing as a CI though, for example. Any questions for me I'd be glad to answer if no one has already :)
 
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